Published this week, this paper by Stephen Levine, E. Abbruzzese, and Julia M. Mason, summarises the prevailing informed consent model of care and its concerning ethical implications. They carefully consider the growth in demand for informed consent clinics and their lack of a truly informed consent basis. Poor evaluations, a lack of information provision, an absence of information on rates of detransition, and misleading use of suicide statistics all contribute to a rocky foundation for care based on informed consent.
The Dutch study, on which the prevailing model of affirmative social and medical transition of children is based, is critiqued and found to be utilised far beyond the original study’s limitations.
The authors then propose a way forward which requires consent to become an ongoing process rather than a discrete event and one which is explicit, together with full disclosure of all the associated side effects of transition and full involvement of the family.
Overall a really great summary of the issues and the literature. The following are direct quotes, concerning aspects of gender transition and the consent process.
On Social Transition:
Informed consent for social transition represents a gray area. Evidence suggests that social transition is associated with the persistence of gender dysphoria (Hembree et al., 2017; Steensma, McGuire, Kreukels, Beekman, & Cohen-Kettenis, 2013). This suggests that social gender transition is a form of a psychological intervention with potential lasting effects (Zucker, 2020). While the causality has not been proven, the possibility of iatrogenesis and the resulting exposure to the risks of future medical and surgical gender dysphoria treatments, qualifies social gender transition for explicit, rather than implied, consent.
On disclosure of risk:
In all settings, the informed consent discussions for gender-affirmative care should include three central ideas:
1.The decision to initiate gender transition may predispose the child to persist in their transgender identity long-term.
2.Many of the physical changes contemplated and undertaken are irreversible.
3.Careful long-term studies have not been done to verify that these interventions enable better physical and mental health or improved social functioning, or that they do not cause harm.
The informed consent process, culminating with a signed document, signifies that parents and patient have been educated about the short- and long-term risks, benefits and uncertainties associated with all relevant stages of the gender-affirmative interventions. The process must also inform the patients and families about the full range of alternative treatments, including the choice of not socially or medically treating the child’s or adolescent’s current state of gender/body incongruence.
On working with parents and families
When patients are age 18 and older, and in some jurisdictions as young as age 15 (Right to medical or dental treatment without parental consent, 2010), they do not legally require parental approval for medical procedures. But because an individual’s change of gender has profound implications for parents, siblings, and other family members, it is usually prudent for clinicians to seek their input directly or indirectly during the informed consent process. This is done by requesting a meeting with the parents.
On the Dutch study (Vrouenraets, de Vries, de Vries, van der Miesen, & Hein, 2021) assessing an adolescent’s ability to consent to gender transition:
This study suffers from two significant limitations involving the MacCAT-T tool. It was never designed for children. Rather, it was designed to assess medical consent capacities of adults suffering from conditions such as dementia, schizophrenia, and other psychiatric disorders. There is a fundamental lack of equivalency between consenting to treatment by adults with cognitive impairments and obtaining consent from healthy children whose age-appropriate cognitive capacities are intact, but who lack the requisite life experiences to consent to profound life-changing medical interventions. We doubt, for example, whether even highly intelligent children who have not had sexual experiences can meaningfully comprehend the loss of future sexual function and reproductive abilities.
In addition, even for adults, the MacCAT-T tool has been criticized for its exclusive focus on cognitive aspects of capacity, failing to account for the non-cognitive aspects such as values, emotions and other biographic and context specific aspects inherent in the complexity of the decision process in real life (Breden & Vollmann, 2004). Children’s values and emotions undergo tremendous change during the process of maturation.
On young adults’ ability to consent:
Young people who have reached the age of majority, but who have not reached full maturation of the brain represent a unique challenge. It is well-recognized that brain remodeling proceeds through the third decade of life, with the prefrontal cortex responsible for executive function and impulse control the last to mature (Katz et al., 2016). The growing number of detransitioners who had been old enough to legally consent to transition, but who no longer felt they were transgender upon reaching their mid-20’s, raises additional concerns about this vulnerable age group (Littman, 2021; Vandenbussche, 2021).